This story needs to be shared. I had never heard of PANDAS before, but over the last couple months it has come up multiple times. Because I shared this story with one friend, she was able to get a diagnosis for her son that completely changed his life. Allison's story with PANDAS showed up as anxiety. PANDAS presented very differently for my friend's son. It presented as GI issues like Lily.
As parents, we don't ever think strep is that dangerous, until it is.
Allison's Story with PANDAS:
On Sunday, January 15, 2017, our world changed. We had no idea what lay ahead of us over the next 6 months and all that God was going to do in the storm ahead.
Our day started out normal until I asked Allison to go downstairs to get something off our kitchen counter. She couldn’t do it. She couldn’t leave my side – literally. The thought of going to the kitchen while I stood at the top of the stairs petrified her to the point of tears. At that point, I thought she was just being ridiculous, but things got worse from there. She developed tics, pulling at her throat and pounding on her chest. She became anorexic, refusing to eat anything except peanut butter. She cried hysterically each morning before school and would cling to me so hard that my arms became bruised as I peeled her off me and forced her into the school building. She only lasted a couple of hours before I had to pick her up before noon each day, being told that she had cried uncontrollably while she was there. Allison said it was too loud and too bright in her classrooms.She developed OCD tendencies and was afraid to touch her desk or food, fearing that she would get germs that would make her sick. Steve had to restrain Allison if I had to go someplace. Her separation anxiety was so bad that one evening she ran away from home while I was at church. I slept with her at night. And I cried….everyday. What was wrong with my confident independent 11-year-old? Was this our new normal?
Her pediatrician said she was suffering from anxiety.
Over the next two months, we were told that she was the worst case of anxiety the school had ever seen. We were told to medicate her. We worked with teachers to develop behavioral plans to get her to stay in class, but they didn’t work. We did her schoolwork at home. She was not able to function.
One week after Allison got sick we had some friends over at the house. After seeing Allison, our friend Julie mentioned PANDAS. As a social worker in the schools, she had seen cases where kids became totally different and said it was related to a strep infection. PANDAS – Pediatric Autoimmune Neuropsychological Disorder Associated with Strep – is thought to effect 1 in 200 children. I mentioned it to her doctor, but she said that she really didn’t believe it was the issue. Surely Allison was struggling with anxiety. I was not convinced and started researching and researching PANDAS. Allison had 5 of the 7 typical symptoms. I pushed her doctor and finally after a month, we got her tested for strep. It came back positive! The doctor put Allison on Amoxicillin for 10 days, but there was no change. That seemed to confirm the doctor’s diagnosis, but Steve and I weren’t convinced.
We sought out a PANDAS specialist at VCU Children’s Hospital, Dr. Zhao, who ran extensive blood-work.
He found strep in high levels in her blood. He put Allison on Augmentin, a heavy-duty antibiotic, for 30 days. After just two days, Allison said that she felt better. After 5 days, she said, “Mom, I can separate from you easier.” That day I cried again, but a hopeful cry. I went out to get coffee and she yelled, “Bye” from her room. That was it. Just ‘bye’. No crying. No bruised arms. No restraining. No screaming. I got to the end of my street, parked the car and cried. That’s when our healing began.
After 30 days on Augmentin, Allison started back to school. We were determined to have her go back before the year ended, and she did it! We had to adjust her schedule, giving her frequent breaks when necessary. I ate lunch with her every day – she never went back into the cafeteria. She finished the school year and graduated 5th grade!
We continue to work on getting her eating back to normal and, with the help of a counselor, practice strategies to help her with her anxiety.
While she is still very afraid of getting PANDAS again, Allison is now in middle school and thriving!
We are so grateful that our friend mentioned PANDAS right away. Allison was diagnosed within two months of getting sick. Many families are not that fortunate. The average amount of time it takes for a child to be diagnosed is 3 years! That diagnosis comes after seeing multiple doctors, receiving many incorrect diagnoses, and requiring parents to fight for their children.
I took Allison back to her pediatrician 2 weeks after she started the Augmentin and the doctor was astounded at the improvements she saw. The reality of PANDAS and the possibility of a cure was sitting on her examining table. By the end of our time together, the doctor said that she had some other patients she needed to revisit. I was overjoyed that she was willing to listen and see what she didn’t see before.
Many doctors continue to say that PANDAS isn’t real. Many don’t understand it or haven’t heard of it. Because of all we went through, we want to tell as many people as possible about PANDAS. To do so, we are partnering with PRAI – Pediatric Research and Advocacy Initiative – to raise $6,000 in honor of the 6 months that Allison was sick. Please help us support PRAI’s mission of raising awareness, increasing access to care and investing in research by making a tax-deductible donation through this page. I know we can do it! We desperately need to raise awareness for this scary and complicated disorder.
Thank you SO much for your support. Please feel free to share our story and link. The more people who know about this crisis, the better chance we have at finding a cure.
PANDAS is not rare. It's rarely diagnosed.
Thank you for partnering with us!
Sandy, Steve, Allison and Madeline